20 Jul 2007

There's definitely an air of Harry Potter fever around here. I'm hoping it stays dry tonight as Lady and I are planning to queue up outside the bookshop at midnight to buy 'The Deathly Hallows'. We are very excited to see how it all ends, having enjoyed and discussed all the previous books in great detail. Lady has been telling me some of her latest theories, most of which involve Poly-juice potion. She's convinced Snape is evil, while I'm of the opposite opinion. Can't wait to find out! I'll read lots of it aloud tomorrow, so we can enjoy the story together. We all went to see the 'Order of the Phoenix' film the day after it was released. (We couldn't go on July 12th, since that other Order, the Order of the Orange, were having their wee walks around various towns and we just stayed at home well away from it all.) The film was great. We went to an early show and there were only a few others in the cinema with us.

As I write, Lady and Thomas are playing the HP PC game. Duncan has been customising his trains. He keeps painting them with the watercolours paints. He wanted the red trim at the bottom of each engine to be lighter, so he mixes a bit of red and white to make it just right.

One of his favourite toys these days, is a wipe clean drawing board, that scrolls between 4 screens, and allows for a short commentary on each screen. Duncan just uses it as a dictaphone. He keeps recording little songs or phrases and playing them back. It's hilarious! He has made the rest of us speak into it too, telling us what to say. Lady had to repeat the expression 'G for gow, G for gow, ow, ow.' What it means or where it came from, I've no idea. There's a song he sings, it's either, 'I'm a robber man' or 'I'm a rubber man'. But he shouts it really loud in this harsh rock star voice. As expected, there've been several word perfect recordings of classic Thomas The Tank Engine stories too.

Duncan's speech continues to improve. He now gives me more complicated instructions like, 'Put the 2 keys in the cupboard downstairs, now.' It's a far cry from when he was almost 3, and I got all excited because he looked at a plane flying overhead and muttered something which sounded like it may have been the word 'plane'. He only knew about 10 words when he was 3.

He's commenting on stories I'm reading. I was reading Snow White, and he kept looking at the picture of Snow White's mother, then one of the evil queen. After a lot of thought, he told me that 'the nice queen turned into nasty queen.' He got upset when I read about the woodcutter's instructions to kill the girl, saying 'no die! No Snow White die!' and was relieved when she got away safely. He tells the story back now, with a bit of prompting, and always emphasises that Snow White does NOT die.

Thomas was talking about something peculiar Duncan did, and said he was a bit like an alien. He didn't say it in a mean way at all. It seemed he was trying to find words to express the differences between Duncan and himself and other boys. I said, 'Duncan's not an alien. He's a boy like you. He's autistic and just does some things differently to you because of his autism.'We'll just keep talking about these sorts of things as we go. There won't be any need for a big conversation, a big revealing of the family secret, because everyone is growing up knowing about and accepting of, autistic differences.

11 Jul 2007

On Sunday, (after I'd calmed down a bit, he he) we all got in the car and went to one of our favourite places, the Railway Museum. We rode in the steam train, and the children each bought a little gift in the shop. This shop is a Thomas the Tank Engine mecca.

It was nice, and Duncan loved watching the engine back onto the carriages and seeing the man couple them together. The best bit was when he was able to watch the driver shoveling coal on the fire. We rode the train twice, and the second time it was raining. We had no coats, but Duncan still wanted to watch the engine shifting from one end of the train to the other, so I had to stand in the rain with him. We were the only people out there!

I read a beautiful post on the Autism Parents Forum by the woman who has become the heart of that growing group of people wanting to help their children, while loving them for who they are. I asked for, and was granted, permission to copy what she wrote here.

Do not tell me that you hope he will be cured, because then you will tell me he will lose his fantastic memory, the way he can whizz through a jigsaw puzzle after only just seeing it, the way he can recite whole poems and stories, even if he hasn't heard them in a while.

Do not tell me that he will grow out of it, because then he will lose the way he kisses with his forehead and plays with my hair and touches my face, not because he wants sweets, or to stay up for a bit longer, but because he loves me, nothing more complicated than that.

Do not say he cannot learn, because he perceives the world in a different way to you. See him remember places he's not been to in months and watch him read numbers, know colours, shapes and letters and then dare to say he cannot learn, because he can't ask for a drink.

Do not demand vocalised speech for him as the be all and end all, let it be his choice and give him other options. Do not presume that silence means compliance, that a failure to say if something is wrong means that everything is right. Let him sign, draw, write, talk, whatever he needs to get his point across and never, ever belittle him for not opening his mouth, or for opening his mouth and communicating in a way that may seem strange to you.

Do not presume to think his worth can be measured on how social he is, how much peer pressure he succumbs to as he gets older, how much he is able to network. As he grows, let his worth be measured on the respect he gives others, on his sense of justice and mercy, on his willingness to help those in need if he is capable of that help.

Do not take my smart, funny, affectionate little boy and try and mould him into your rigidly defined views of what is socially acceptable. Let him learn, let him develop and let him understand that his value in the world is as equal as yours.

9 Jul 2007

I am riled. Yesterday, I was having a nice morning, espresso and chocolate croissants for breakfast, chatting with Gordon about stuff. He started to read The Observer online and shared the top story with me; New health fears over big surge in autism.

I initially wondered what the new 'health fear' was. Had someone identified a link between autism and some illness or other? As we read, it became clear that autism was the health problem.

The article subtitle sets the agenda right away;

· Experts 'concerned' by dramatic rise· Questions over triple jab for children

It was to be an MMR story. I was fully expecting the testimony from the USA vaccine litigation to be revealed, since it's so recent and so relevant. The expert testimony of Dr Stephen Bustin (blogged so well by Autism Diva), destroyed the credibility of those claiming to link MMR to autism, via the 'evidence' of measles virus in the tested children's guts. Dr Bustin examined the lab responsible for analysing the samples, and was able to prove that they had only ever detected false positives. There was no evidence of measles in any of the samples, whatsoever.

Also in the same trial, the evidence of Dr Nicholas Chadwick, showed just how far Wakefield went to misrepresent and just plain lie about his data. Dr Chadwick worked at the Royal Free with Wakefield, and analysed the samples taken from the poor autistic children. (Don't forget, these samples were from gut biopsies taken under general anaesthetic, and from lumbar punctures; how the hell did Wakefield get ethical approval for that?)

Q. So you personally tested while you were in Dr. Wakefield's lab gut biopsy material, CSF and PBMCs?

A. Yes, that's right.

Q. And all the results were either negative, or if they were positive it always turned out that they were false positives?

A. Yes, that's correct.

Q. Did you inform Dr. Wakefield of the negative results?

A. Yes. Yes.

I assumed the journalist, Mr Campbell, would have done at the very least a quick Google news search that would have pointed to some of the recent articles on the issue, like Dr Michael Fitzpatrick's article,‘The MMR-autism theory? There's nothing in it.’ which tells how Dr Bustin has been prevented by the failed but drawn out UK MMR litigation, from making public his findings on the lack of measles in all the samples.

Clearly, this was all too difficult for Mr Campbell.

So on to the article.

The number of children in Britain with autism is far higher than previously thought, according to dramatic new evidence by the country's leading experts in the field.

A study, as yet unpublished, shows that as many as one in 58 children may have some form of the condition, a lifelong disability that leads to many sufferers becoming isolated because they have trouble making friends and often display obsessional behaviour.

This is rubbish. Firstly, the study is unpublished. Next, as Public Address has pointed out, it refers to a screening questionnaire called the CAST (Childhood Asperger Syndrome Test), a tool designed not to diagnose autism, but to flag up children who may turn out to be autistic. So to have screaming headlines about 1 in 58 children having autism, is just plain dumb.

I'd also take issue with the claim that this study was performed by the UK's leading autism authorities. And could journalists please stop calling people with certain conditions 'sufferers' as it really annoys them!

Seven academics at Cambridge University, six of them from its renowned Autism Research Centre, undertook the research by studying children at local primary schools. Two of the academics, leaders in their field, privately believe that the surprisingly high figure may be linked to the use of the controversial MMR vaccine. That view is rejected by the rest of the team, including its leader, the renowned autism expert, Professor Simon Baron-Cohen.

So here we have the MMR link. The study mentioned had absolutely nothing to do with MMR, but Mr Campbell manages to shoehorn it into the article all the same. What marvelous journalism.

The two 'experts' mentioned who privately believe that autism is linked to the MMR (but not all that privately, or we wouldn't be reading about it in a major broadsheet) were both paid large sums by the claimants in the failed UK MMR litigation. They are Dr Fiona Scott and Dr Carol Stott. Guess who Dr Stott now works for, oh yeah, Andrew Wakefield, in his Texas autism treatment shop, where he charges vulnerable and gullible parents loads of money for non-proven 'therapies'. For a fun bit of background reading on Stott, read Bad Science, where it's also revealed that Dr Scott is not happy about the leak.

Later (much later, you'd almost think it's been given less prominence on purpose) in the article we read;

...

Professor Baron-Cohen, director of the centre and the country's foremost authority on the condition, said he did not believe there was any link between the three-in-one vaccination and autism. Genetics, better recognition of the condition, environmental factors such as chemicals and children's exposure to hormones in the womb, especially testosterone, were more likely to be the cause, he commented. 'As for MMR, at this point one can conclude that evidence does not support the idea that the MMR causes autism.'

The other thing that is not discussed, is how the uptake of MMR is falling, while the numbers of children diagnosed with autism continues to rise. So how is there a link?

Then we get a potted history of the MMR story, and the line, 'The medical and scientific establishment denied Wakefield's claim, described research he had co-authored as 'bad science', and sought to reassure the public, with limited success. ' Why are there quotation marks around the words bad science? It was bad science!

It all becomes clear. This is a propaganda piece, designed to make people think that there is some sort of autism MMR link, just in time for Andrew Wakefield's GMC disciplinary hearing later this month.

Wakefield and two former Royal Free colleagues are due to appear before the General Medical Council next week to answer charges relating to the 1998 research. The trio could be struck off.

With any luck they will be struck off. The article also advertises a book due to be released by a GP who is cashing in on the unfounded parental fears of MMR by selling single jabs. Perhaps he's the journalist's cousin or something and he wants to give him a wee leg up.

A book to be published this month by Dr Richard Halvorsen, a London GP who provides single vaccines privately to babies of parents concerned about MMR, will fuel the controversy. It will present new evidence of children allegedly being damaged by vaccinations and linking increased autism to MMR.

It all ends with some good advice, tucked right in at the end;

But Dr David Salisbury, national director for vaccines and immunisation at the Department of Health, said last night: 'The evidence is absolutely clear. No published study has ever shown a link between autism and the MMR vaccine. It is absolute nonsense to suggest otherwise.'

Of course you did Andy. That's why the GMC are investigating the following allegations (quotes below from GMC documents);

It is alleged that the three practitioners were named as Responsible Consultants on an application made to the Ethical Practices Committee of the Royal Free Hospital NHS Trust (“the ethics committee”) in 1996 to undertake a research study involving children who suffered from gastrointestinal symptoms and a rare behavioural condition called disintegrative disorder. The title of the study was “A new paediatric syndrome: enteritis and disintegrative disorder following measles/rubella vaccination”. The Panel will inquire into allegations that the three practitioners undertook research during the period 1996-98 without proper ethical approval, failed to conduct the research in accordance with the application submitted to the ethics committee, and failed to treat the children admitted into the study in accordance with the terms of the approval given by the ethics committee. For example, it will be alleged that some of the children did not qualify for the study on the basis of their behavioural symptoms.

It is further alleged that the three practitioners permitted a programme of investigations to be carried out on a number of children as part of the research study, some of which were not clinically indicated when the Ethics Committee had been assured that they were all clinically indicated. These investigations included colonoscopies and lumbar punctures. It is alleged that the performance of these investigations was contrary to the clinical interests of the children.

Oh, so that's how they managed the issue of ethical consent for dangerous, painful and invasive procedures on small children.The list of wrong doing continues;

The research undertaken by the three practitioners was subsequently written up in a paper published in the Lancet in February 1998 entitled “Ileal-Lymphoid-Nodular Hyperplasia, Non-Specific Colitis and Pervasive Developmental Disorder in Children” (“the Lancet paper”).

It is alleged that the three practitioners inaccurately stated in the Lancet paper that the investigations reported in it were approved by the ethics committee.

The Panel will inquire into allegations that Dr Wakefield and Professor Walker-Smith acted dishonestly and irresponsibly in failing to disclose in the Lancet paper the method by which they recruited patients for inclusion in the research which resulted in a misleading description of the patient population in the Lancet paper. It is further alleged that Dr Wakefield gave a dishonest description of the patient population to the Medical Research Council.

The Panel will inquire into allegations that Dr Wakefield and Professor Walker-Smith administered a purportedly therapeutic substance to a child for experimental reasons prior to obtaining information about the safety of the substance. It is alleged that such actions were irresponsible and contrary to the clinical interests of the child.The Panel will inquire into allegations that Dr Wakefield was involved in advising solicitors acting for persons alleged to have suffered harm by the administration of the MMR vaccine. It is alleged that Dr Wakefield’s conduct in relation to research funds obtained from the Legal Aid Board (“LAB”) was dishonest and misleading. It will be alleged that Dr Wakefield ought to have disclosed his funding from the LAB to the Ethics Committee but did not.

The Panel will inquire into allegations that Dr Wakefield ordered investigations on some children as part of the research carried out at the Royal Free Hospital from 1996-98 without the requisite paediatric qualifications to do so and in contravention of his Honorary Consultant appointment.

The Panel will inquire into allegations that Dr Wakefield failed to disclose his involvement in the MMR litigation, his receipt of funding from the LAB and his involvement in a Patent relating to a new vaccine to the Editor of the Lancet which was contrary to his duties as a senior author of the Lancet paper.

The Panel will inquire into allegations that Dr Wakefield acted unethically and abused his position of trust as a medical practitioner by taking blood from children at a birthday party to use for research purposes without ethics committee approval, in an inappropriate social setting, and whilst offering financial inducement.

Those are some serious allegations. This little ploy of redirection and resurrection of the stinky cadaver of MMR-autism causation, is not going to detract from the GMC investigation.

About this Blog

Curious, enthusiastic and affectionate mother of 3, one of whom is perfectly autistic, I find great joy in each of my children and strive to help them learn and grow in an atmosphere of love and acceptance of their differences, difficulties and strengths.

The children's pseudonyms reflect my autistic son's one time love of all things Thomas the Tank Engine.

This is my personal blog so all posts and opinions shared are my own and not those of my employer.